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Dialogue with pain

July 14, 2014

How and when we give meaning to bodily pain – by Louise Hide

Etching of a man in pain. By W Hebert, c.1770, after C le Brun. Wellcome Library

Etching of a man in pain. By W Hebert, c.1770, after C le Brun. Wellcome Library

Pain destroys lives. Most of us will do almost anything to avoid or at least to mitigate it. We pop a pill for a headache, welcome the anaesthetist when the surgeon’s knife threatens, and find solace in the prospect of an expanding cornucopia of powerful analgesics. As Jo Shapcott’s poem ‘P’ (excerpted at the bottom of this piece) highlights, we dread being in pain. Yet everyone will experience it at some time in their medical life story. Getting it is very worrying; not sensing it doesn’t dull the anguish.

‘Pain and its Meanings’ convened in early December 2012, hosted by the Birkbeck Pain Project in collaboration with Wellcome Collection. It was a two-day interdisciplinary symposium that asked crucial questions about our dialogues with pain, our historical and contemporary attitudes towards understanding and treating it, and – crucially – what happens when we do not feel pain? During the symposium, Joanna Zakrzewska, an NHS consultant who leads a multidisciplinary facial pain unit at University College London Hospitals (UCLH), described how people who are congenitally insensitive to pain might fall asleep on hot water bottles, iron their hands, or run on a broken leg until it collapses. Pain does, therefore, have its uses. It warns us of danger and damage to the body. It also has meaning.

Pain experiences are constructed by physiology, as well as by social, cultural and biomedical discourses. They vary between individuals, cultures and historical periods. As a result, pain is a vast and complex subject that necessarily comes within the purview not only of clinicians and neuroscientists but also of historians, sociologists, anthropologists, philosophers, theologians and cultural critics.

Artistic expression makes a vital contribution to our understanding of pain, making that understanding more deeply human by engaging our empathy as well as our intellect. And those who add most are the people who live with chronic pain day after day. The objective of the symposium was, therefore, to bring as many of these voices and perspectives together to strike up a conversation around the meaning of pain – past, present and future.

What, then, is pain? Are we talking about physical pain or psychological suffering? Is it chronic or acute? Where is the line drawn? And how helpful are these distinctions anyway?

Pain is an extremely slippery concept. Broadly, it might be defined as a bodily sensation that is interpreted through a complex mesh of neurobiological, cultural, emotional and cognitive processes. Pain does not need an obvious organic cause, such as a lesion.

As the historian and principal investigator of the Birkbeck Pain Project Joanna Bourke reminded us, people with phantom limb pain feel pain in a part of the body, such as the leg, that no longer exists. We work on the premise, therefore, that if a person says they feel pain, they feel pain.

Following an intensive two-year period of research into the history of pain, Bourke used the symposium to address important questions that have piqued her interest: How has the meaning of pain changed over time? Which ideological purposes have these meanings sought to fulfil? Which agencies were responsible for forming and re-forming these beliefs? She strips pain of any ontological status.

Pain is not an object, she argues, it is an “event”, a “way of perceiving an experience and of being in the world”. She explained how pain events are “historically constituted and reconstituted in their interaction with language, discourse, social and environmental interactions, and bodily comportment and physiology”. Cultural critic Marina Warner illustrated this by describing how hagiographies valorised pain as a purifying process and route to salvation; saints submitted to it because it was ordained by God.

For Javier Moscoso, also a historian, pain is a performance, a drama that has been shaped by a sweep of discourses created within artistic, juridical and scientific circles from the Renaissance to the present day. Pain dramas, he argued, have been enacted in myriad settings from the convent to the torture chamber, the sick bed and the operating theatre, with the major protagonists – the sufferers, the torturers and the onlookers – investing pain with different meanings and values over time.

What are the languages of pain? How do we talk about being in pain? Whether one perceives pain as an objective thing imbued with agency, or as an event or a performance that is inextricably linked to the person in pain, it is extraordinarily difficult to describe in words. Yet, during our two-day event, pain narratives were communicated by speakers, artists and audience members through speech, movement, gestures, music, art and silence. Indeed, in this context, empathy brought people closer together.

Warner drew our attention to debates about the therapeutic effects of pain narratives in cruel stories in fairy tales. Should they be softened or remain dark, allowing children to journey into frightening imaginative spaces where they might learn to face and transform fear?

Pain can also drive people apart. For the poet Jo Shapcott, who read for the first time her poem ‘P’, which was commissioned by the Birkbeck Pain Project, pain is difficult to communicate because of its stigmatised status: “There is an expectation that we shall not feel pain,” she explained. “It makes it complex. It makes it hard to talk about; to find a language that people are ready to accept and think about.”

Crucially, in the consulting room, communication issues come to the fore when clinician and pain sufferer meet face-to-face. In Daniel Eisner Harle’s ten-minute operetta As Above, So Below, also commissioned by the Birkbeck Pain Project and premiering at the event, layers of miscommunication between doctor and patient are evoked through the voices of two singers, a flute, a horn and a hurdy-gurdy.

Visual artist Deborah Padfield also turned the camera on the consultation process in her film face2face, duet for pain, which explores issues around narrative and identity. Made while she was working as artist in residence at UCLH, it juxtaposes two perspectives on pain: those of the pain sufferer and the clinician at a consultation. “The film explores how we look at each other… pain narrative is to some extent being constructed at that moment. It needs to come into being in a very shared way,” she said.

Zakrzewska reinforced this point, exhorting clinicians – who made up at least one-third of the audience – to learn how to communicate with and listen to patients. Both she and sociologist Gillian Bendelow called for improvements in teaching pain in medical schools. This then brings us to the politics of pain.

Amid so much discussion around meaning, it is all too easy to forget about the daily reality of living with pain for millions of people. Tom Shakespeare, who suffers from chronic neuropathic pain himself, shifted the focus back to the body, in this case the disabled body. He took a well-aimed shot at the humanities and social sciences for “colonising every inch of our lives” and “abducting from plain view the living, breathing, screaming human beings whose lives are made unbearable by things like pain”. In his view, disability studies needs to refocus on the body. Chronic pain “limits what you can do,” he said. “It causes people to become stressed, distressed and depressed.”

Bendelow’s paper resonated with this as she decried the lack of political will to focus on chronic pain and the potential social consequences. Marginalisation and isolation are becoming increasingly problematic, she contended, especially in view of greater longevity and the growing prevalence of illnesses that occur later in life.

Out of six rich papers, poetry, music, film and audience engagement, a number of strong messages emerged from the symposium. Pain first needs more thought and engagement across disciplines and within contexts of multiple meanings: sensory, affective, cognitive, cultural, and all that these imply.

Secondly, to then help people manage their pain requires an understanding by both clinicians and sufferers of the inherent complexities of pain experiences. The meaning people ascribe to their pain affects how they relate to and negotiate with it. Zakrzewska recommended a thorough bio-social and psychological approach that might include medication, physiotherapy, surgery and psychological therapies. Clinicians need to learn to listen and give patients time to tell their stories, much as they did in the 18th century when the person and the body were viewed far more holistically.

A third finding is that health inequalities need to be addressed. Analgesics should be more widely available for those who desperately need them, particularly in poorer countries. Pain clinics should be given a more central healthcare role everywhere.

It follows, fourthly, that pain still needs to be destigmatised and raised higher on the social and political agenda. A space needs to be created in which it can be discussed openly.

As Shapcott said: “There are people in pain everywhere we look. Often quite isolated, even within their families, because it still is a powerful taboo. Our expectation is that we will be healthy and happy. That’s what we deserve, what we must have as 21st-century beings.” For the pain sufferer, Shakespeare added, “pain has no past or future, just a present. It is the most lonely thing in the world.”

The Birkbeck Pain Project is funded by the Wellcome Trust and based at the Department of History, Classics and Archaeology, Birkbeck, University
 of London. It includes Professor Joanna Bourke, Dr Carmen Mangion and Dr Louise Hide, who 
thank Wellcome Collection and particularly Rosie Stanbury for organising the pain event. You can 
read a booklet and listen to the talks – as well as Jo Shapcott reading her poem and Daniel Eisner Harle’s operetta – on the project website.

Dr Louise Hide welcomes contributors to the team’s research into pain (l.hide@bbk.ac.uk).

From ‘P’, © Jo Shapcott:

Please, not the one
a dog would be put down for;
and let it not be the one
which is chronic;
nor the one
which is acute;
let it not be the one
to demand its own journal;
not the one
between seven and ten, or at ninety per cent;
not the one
I can point to with my finger;
and, even more, not the one
I can’t point to;
not the one
I am asked to describe as black, or red, or, is it, white;
not the one
with my own button to press, but not too often;
not the one
which is postmodern;
not the one
which is a needle, a hive, an iceberg, a volcano;
not the one
high on heartbeat, skin conductance and EEG;
not the one
which is classic;
not the one
which is earth, which is air, which is fire, which is water;
let it not be the one
where all the words and numbers live;
not the one
with my face.

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